Ipilimumab treatment

I think I mentioned to you before that I did Ipi in the adjuvant setting, which is 10mg/kg dosing. I did not have any serious side effects from it, just minor easy to deal with ones, I have them listed in my profile. There is no predicting how anyone will react to any of these drugs. It is good you'll be going to a melanoma specialist, they will be more informed about the side effects and know how to properly treat them if something serious comes up. The main serious ones we look out for are Colitis.. so if he was to start having uncontrollable diarrhea, my onc has told me to let her know if I have more than 3 diarrhea in a day. I have never had that problem, I also take a good probiotic to keep my gut healthy so I like to think that has warded off any gastro side effects. Something your fiance can think about starting if he's not already taking one. Another one to look out for are thyroid issues. A bad headache that doesn't go away, being so fatigued he can't get out of bed, things like that would need to get checked out. He will get bloodwork done before every infusion, checking his thyroid, liver enzymes, blood counts, etc. The doc will go over all of the more serious side effects with you guys so you know what to look out for and don't be afraid to bug the heck out of the doctor's office with any little thing that seems off or not right. It's better to be overly cautious than to wait it out until it's gotten too bad. 

Hopefully he won't have to deal with any of the yucky side effects, but it's good you're getting as much info as you can beforehand to be prepared.

I think I mentioned to you before that I did Ipi in the adjuvant setting, which is 10mg/kg dosing. I did not have any serious side effects from it, just minor easy to deal with ones, I have them listed in my profile. There is no predicting how anyone will react to any of these drugs. It is good you'll be going to a melanoma specialist, they will be more informed about the side effects and know how to properly treat them if something serious comes up. The main serious ones we look out for are Colitis.. so if he was to start having uncontrollable diarrhea, my onc has told me to let her know if I have more than 3 diarrhea in a day. I have never had that problem, I also take a good probiotic to keep my gut healthy so I like to think that has warded off any gastro side effects. Something your fiance can think about starting if he's not already taking one. Another one to look out for are thyroid issues. A bad headache that doesn't go away, being so fatigued he can't get out of bed, things like that would need to get checked out. He will get bloodwork done before every infusion, checking his thyroid, liver enzymes, blood counts, etc. The doc will go over all of the more serious side effects with you guys so you know what to look out for and don't be afraid to bug the heck out of the doctor's office with any little thing that seems off or not right. It's better to be overly cautious than to wait it out until it's gotten too bad. 

Hopefully he won't have to deal with any of the yucky side effects, but it's good you're getting as much info as you can beforehand to be prepared.

I think I mentioned to you before that I did Ipi in the adjuvant setting, which is 10mg/kg dosing. I did not have any serious side effects from it, just minor easy to deal with ones, I have them listed in my profile. There is no predicting how anyone will react to any of these drugs. It is good you'll be going to a melanoma specialist, they will be more informed about the side effects and know how to properly treat them if something serious comes up. The main serious ones we look out for are Colitis.. so if he was to start having uncontrollable diarrhea, my onc has told me to let her know if I have more than 3 diarrhea in a day. I have never had that problem, I also take a good probiotic to keep my gut healthy so I like to think that has warded off any gastro side effects. Something your fiance can think about starting if he's not already taking one. Another one to look out for are thyroid issues. A bad headache that doesn't go away, being so fatigued he can't get out of bed, things like that would need to get checked out. He will get bloodwork done before every infusion, checking his thyroid, liver enzymes, blood counts, etc. The doc will go over all of the more serious side effects with you guys so you know what to look out for and don't be afraid to bug the heck out of the doctor's office with any little thing that seems off or not right. It's better to be overly cautious than to wait it out until it's gotten too bad. 

Hopefully he won't have to deal with any of the yucky side effects, but it's good you're getting as much info as you can beforehand to be prepared.

Hi ,

Sorry you are here. Approved choices for treatment for stage 3 are limited. It seems some oncologists will give ipilimumab at 3mg a kilo as this reduces side effects and is the dose now given at stage 4 but this is an off label useage. Side effects vary widly for different individuals but are most severe when ipi is used in combination with pembro or nivo (The pd1 drugs ), not everyone gets them – the most common being fatigue , rash and itchy skin. The docs are better at recognising and treating these side effects as experience has grown in the use of these drugs.

Had a quick look on clinical trials .gov for you. This trial might give you the opportunity to have either ipilimumab or pembrolizumab aka Keytruda. Think they are recruiting at the Cleveland… but can't work out the dose of ipi used. https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&locn=cleveland+clinic&rank=3.

Might be worth asking/ thinking about – but pembro would be a more time intensive treatment… However, use of some immunotherapy drugs at stage 3 can sometimes act as a bar to other trials later if there was progression at a later date. You would be randomised to recieve either the standard treatment or pembro-  sadly no choice.

Good luck with the scans tomorrow and agree it is a really good idea to go to a melanoma specialist centre for follow up treatment and care. Sorry to be introducing other possibilities when it is already difficult to navigate treatment options and choices.

Best wishes,

Deb

Hi ,

Sorry you are here. Approved choices for treatment for stage 3 are limited. It seems some oncologists will give ipilimumab at 3mg a kilo as this reduces side effects and is the dose now given at stage 4 but this is an off label useage. Side effects vary widly for different individuals but are most severe when ipi is used in combination with pembro or nivo (The pd1 drugs ), not everyone gets them – the most common being fatigue , rash and itchy skin. The docs are better at recognising and treating these side effects as experience has grown in the use of these drugs.

Had a quick look on clinical trials .gov for you. This trial might give you the opportunity to have either ipilimumab or pembrolizumab aka Keytruda. Think they are recruiting at the Cleveland… but can't work out the dose of ipi used. https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&locn=cleveland+clinic&rank=3.

Might be worth asking/ thinking about – but pembro would be a more time intensive treatment… However, use of some immunotherapy drugs at stage 3 can sometimes act as a bar to other trials later if there was progression at a later date. You would be randomised to recieve either the standard treatment or pembro-  sadly no choice.

Good luck with the scans tomorrow and agree it is a really good idea to go to a melanoma specialist centre for follow up treatment and care. Sorry to be introducing other possibilities when it is already difficult to navigate treatment options and choices.

Best wishes,

Deb

Hi ,

Sorry you are here. Approved choices for treatment for stage 3 are limited. It seems some oncologists will give ipilimumab at 3mg a kilo as this reduces side effects and is the dose now given at stage 4 but this is an off label useage. Side effects vary widly for different individuals but are most severe when ipi is used in combination with pembro or nivo (The pd1 drugs ), not everyone gets them – the most common being fatigue , rash and itchy skin. The docs are better at recognising and treating these side effects as experience has grown in the use of these drugs.

Had a quick look on clinical trials .gov for you. This trial might give you the opportunity to have either ipilimumab or pembrolizumab aka Keytruda. Think they are recruiting at the Cleveland… but can't work out the dose of ipi used. https://clinicaltrials.gov/ct2/show/NCT02506153?recr=Open&cond=melanoma&locn=cleveland+clinic&rank=3.

Might be worth asking/ thinking about – but pembro would be a more time intensive treatment… However, use of some immunotherapy drugs at stage 3 can sometimes act as a bar to other trials later if there was progression at a later date. You would be randomised to recieve either the standard treatment or pembro-  sadly no choice.

Good luck with the scans tomorrow and agree it is a really good idea to go to a melanoma specialist centre for follow up treatment and care. Sorry to be introducing other possibilities when it is already difficult to navigate treatment options and choices.

Best wishes,

Deb

Hi Bmine 102793, here is a video link to the presentation of the overall survival data from the study of Ipi in the adjuvant setting called EORTC 18071, presented fall of 2016. Best Wishes!!!Ed https://www.youtube.com/watch?v=NIeSOcVcRh4

Hi Bmine 102793, here is a video link to the presentation of the overall survival data from the study of Ipi in the adjuvant setting called EORTC 18071, presented fall of 2016. Best Wishes!!!Ed https://www.youtube.com/watch?v=NIeSOcVcRh4

Hi Bmine 102793, here is a video link to the presentation of the overall survival data from the study of Ipi in the adjuvant setting called EORTC 18071, presented fall of 2016. Best Wishes!!!Ed https://www.youtube.com/watch?v=NIeSOcVcRh4

I agree that you need to get with a Melonoma specialist. There are many clinical trials where as a stage 3  you have the opportunity to skip yervoy and go right to Keytruda or Opdivo which seem to be more potent with less toxicity.

I agree that you need to get with a Melonoma specialist. There are many clinical trials where as a stage 3  you have the opportunity to skip yervoy and go right to Keytruda or Opdivo which seem to be more potent with less toxicity.

I agree that you need to get with a Melonoma specialist. There are many clinical trials where as a stage 3  you have the opportunity to skip yervoy and go right to Keytruda or Opdivo which seem to be more potent with less toxicity.

You've been given some good advice.  Here is a post (with links within that may well be important to your friend's decision) :  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

I wish you both my best.  Celeste

You've been given some good advice.  Here is a post (with links within that may well be important to your friend's decision) :  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

I wish you both my best.  Celeste

You've been given some good advice.  Here is a post (with links within that may well be important to your friend's decision) :  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

I wish you both my best.  Celeste

Hello, While my husband was Stage IV (liver, lungs and unresectable at the C1 C2 spine) and on Ipi he did not have bad side effects and was on the 10 mg/kg and started in March of 2011.  He took the original 4 doses in 12 weeks and then went into the maintenance part of it and became NED in July 2012 and has remained NED for over 4.5 years.  He quit the Ipi infusions in Dec. 2013.

He went to University Hospital and his melanoma oncologist was Dr. Koon.  He will go next month for his 6 year of starting Ipi.  If you would like to read more about his journey you can check out his profile.

Hello, While my husband was Stage IV (liver, lungs and unresectable at the C1 C2 spine) and on Ipi he did not have bad side effects and was on the 10 mg/kg and started in March of 2011.  He took the original 4 doses in 12 weeks and then went into the maintenance part of it and became NED in July 2012 and has remained NED for over 4.5 years.  He quit the Ipi infusions in Dec. 2013.

He went to University Hospital and his melanoma oncologist was Dr. Koon.  He will go next month for his 6 year of starting Ipi.  If you would like to read more about his journey you can check out his profile.

Hello, While my husband was Stage IV (liver, lungs and unresectable at the C1 C2 spine) and on Ipi he did not have bad side effects and was on the 10 mg/kg and started in March of 2011.  He took the original 4 doses in 12 weeks and then went into the maintenance part of it and became NED in July 2012 and has remained NED for over 4.5 years.  He quit the Ipi infusions in Dec. 2013.

He went to University Hospital and his melanoma oncologist was Dr. Koon.  He will go next month for his 6 year of starting Ipi.  If you would like to read more about his journey you can check out his profile.

I'm a Stage IV survivor diagnosed in Aug 2005.  Went on a compassionate use trial of IPI at 10mg/kg in late 2008 – pre FDA approval/Yervoy.  Had 4 initial doses of IPI on the trial with no side effects and great results.  Had one mainentance dose in Jan 2009 and had to stop all together due to severe eye related side effects – guess my system hit it's tipping point.  Treated with high dose steroids for over a year.  The good news is that I was declared NED in Feb 2009 and have remained so to this day and my eyes are just fine.  Back then they knew less about all the side effects – eye issues included.  I felt like a guinea pig in both the trial and treating the eye issues and it was scary at time.  But I wouldn't change a thing….still here…still NED.  I wish your fiance well with the decision and the outcome…hang in there!

I'm a Stage IV survivor diagnosed in Aug 2005.  Went on a compassionate use trial of IPI at 10mg/kg in late 2008 – pre FDA approval/Yervoy.  Had 4 initial doses of IPI on the trial with no side effects and great results.  Had one mainentance dose in Jan 2009 and had to stop all together due to severe eye related side effects – guess my system hit it's tipping point.  Treated with high dose steroids for over a year.  The good news is that I was declared NED in Feb 2009 and have remained so to this day and my eyes are just fine.  Back then they knew less about all the side effects – eye issues included.  I felt like a guinea pig in both the trial and treating the eye issues and it was scary at time.  But I wouldn't change a thing….still here…still NED.  I wish your fiance well with the decision and the outcome…hang in there!

I'm a Stage IV survivor diagnosed in Aug 2005.  Went on a compassionate use trial of IPI at 10mg/kg in late 2008 – pre FDA approval/Yervoy.  Had 4 initial doses of IPI on the trial with no side effects and great results.  Had one mainentance dose in Jan 2009 and had to stop all together due to severe eye related side effects – guess my system hit it's tipping point.  Treated with high dose steroids for over a year.  The good news is that I was declared NED in Feb 2009 and have remained so to this day and my eyes are just fine.  Back then they knew less about all the side effects – eye issues included.  I felt like a guinea pig in both the trial and treating the eye issues and it was scary at time.  But I wouldn't change a thing….still here…still NED.  I wish your fiance well with the decision and the outcome…hang in there!